The following article originally appeared in the May 2017 American Society of Aging Generations Magazine – End-of-Life Care edition.
In his brilliantly written book, Being Mortal, renowned surgeon Dr. Atul Gawande succinctly outlines the dichotomy between the amazing advances in twenty-first century medical technology and our society’s unwillingness to confront death and the dying process and, more specifically, to learn about end-of-life care options. He notes these advances have not only led to increased longevity, but also to associated complications, prolongation of disease states, and suffering:
“Modern scientific capability has profoundly altered the course of human life. People live longer and better than at any other time in history. But scientific advances have turned the processes of aging and dying into medical experiences, matters to be managed by healthcare professionals. And we in the medical world have proved alarmingly unprepared for it” (Gawande, 2014).
Medical ethics also have evolved in concert with this newfound technology and the acknowledgement of its sometimes negative impacts on patients. The tenets of patient autonomy and social justice have risen to become paramount ideals in the doctor− patient relationship, and a movement toward “patient-centered” or “person-centered” care has emerged. While the definitions of these terms differ, the common concept is that it is the patient’s preferences, needs, and values that guide clinical decisions.
The Brittany Maynard Effect
No instance exemplifies this concept more clearly than the case of Brittany Maynard, a young woman from California who in 2014 was dying of brain cancer. Even after undergoing a sophisticated surgery and numerous cancer treatments, her growing tumor was causing debilitating headaches and seizures. After exhausting all treatment options to try to cure her cancer, Brittany left her home and friends and moved to Oregon to take advantage of the state’s Death with Dignity Act. On November 1, 2014, she willingly self-administered aid-in-dying medication to end the unbearable suffering she was experiencing. Within thirty minutes of drinking the medication, Brittany died peacefully in her sleep with her family at her bedside.
Before she died, Brittany became a champion for the rights of terminally ill people. She had been informed of all her end-of-life care options by her medical team and in consultations with our country’s best specialists. She knew what she wanted. She was an autonomous thinker, mentally capable, under no duress or coercion to make her choices, and incredibly brave and gracious. In videos she created, Brittany eloquently outlined her reasons for considering medical aid in dying. She wanted to die on her terms, with her family, in her home, with her poems and her songs. Having the medication available meant knowing she could prevent the very worst, the very last part of dying, if she chose.
Brittany’s story exemplified person-centered care. It was an example of the medical system allowing the patient’s values and priorities—including control over their own death—to be respected. This is why millions of people worldwide responded so powerfully to Brittany’s story, because through her actions, she firmly established that she, the patient, was making her own medical decisions. If healthcare systems truly want to deliver on their commitment to be “person-centered,” then they must implement policies that respect the values of their consumers, including a patient’s control over the circumstances of their looming death. In other words, adopting policies that support giving terminally ill patients the option of medical aid in dying is a hallmark of person-centered care.
A Palliative and Compassionate Medical Practice
Medical aid in dying has been authorized in Oregon since 1997 (Oregon Legislature, 1997). During the past eighteen years, Oregon physicians have been allowed to discuss the full range of options in end-of-life care. As an unexpected consequence, hospice and palliative care in Oregon are unsurpassed in quality. State residents who consider medical aid in dying are almost always enrolled in a hospice program (93 percent), and an overwhelming majority (90.1 percent) are able to die at home, which is an avowed goal of most elderly and dying individuals (Oregon Public Health Division, 2016).
There has been no evidence of abuse of the Oregon Death with Dignity Act, and no evidence that the financially disadvantaged, the uninsured, or persons with disabilities are at risk of coercion (Battin et al., 2007).
The medical aid-in-dying laws in Oregon (1997; 2016), Washington (2008), Montana (Baxter v. Montana, 2009), Vermont (2013), California (2015), and now Colorado (2016) have core safeguards, including strict eligibility requirements, to ensure the laws are safe and work as intended. Two physicians must concur that the dying individual has a terminal illness, with a prognosis of six months or less to live, is mentally capable to make his or her own healthcare decisions, and is under no duress to request an aid-indying prescription. Written as well as oral requests must be made by the patient, and may not be made by a surrogate. If a terminally ill individual presents to the clinician with any symptoms that would indicate impaired judgment, a third opinion from a mental health specialist is necessary to confirm mental capacity before a prescription can be written. Additionally, there are waiting periods before a prescription can be written.
Authorizing medical aid in dying also has the potential to transform the end-of-life experience for dying patients and their families. The law requires doctors to review all available end-of-life care options with their patients— from pain and symptom management to hospice and palliative care—before they can write a prescription for aid in dying. A study in Journal of the American Medical Association (Ganzini et al., 2001) credited Oregon’s Death with Dignity Act with contributing to better conversations between doctors and patients, better hospice care, and better training of physicians on pain management and comfort.
Access to Peaceful Dying and Peace of Mind
The act of obtaining an aid-in-dying prescription is palliative in and of itself. Approximately one-third of terminally ill people do not end up taking the aid-in-dying medication (Oregon Public Health Division, 2016), but just having it on hand—to know that they can take the medication if their suffering were to become unbearable, and that their physician respected and honored their choice—is a great comfort.
Near the conclusion of his book, Dr. Gawande writes: “Life is meaningful because it is a story . . . and in stories, endings matter” (Gawande, 2014). In states where medical aid in dying is authorized, more people do not die because of medical aid in dying; but certainly, fewer people suffer.
Barbara Coombs Lee, R.N., P.A., F.N.P., J.D., is president of Compassion & Choices in Denver, Colorado. David Grube, M.D., is national medical director of Compassion & Choices.
Battin, M., et al. 2007. “Legal Physician-assisted Dying in Oregon and the Netherlands: Evidence Concerning the Impact on Patients in ‘Vulnerable’ Groups.” Journal of Medical Ethics 33(10): 591–7
Baxter v. Montana. 2009. 449, 354 Montana. 234, 224 P.3d 1211 (2009). www.compassionandchoices.org/userfiles/MontanaSupreme-CourtOpinion.pdf. Retrieved September 1, 2016.
California Legislature. 2015. California End of Life Option Act. ABX2-15 End of life. (Sacramento, 2015). http://leginfo.legislature. ca.gov/faces/billTextClient. xhtml?bill_id=201520162AB15. Retrieved September 1, 2016.
Colorado Legislature. 2016. Colorado End-of-Life Options Act. Proposition 106. (Denver, 2016). www.sos.state.co.us/pubs/ elections/Initiatives/titleBoard/ filings/2015-2016/145Final.pdf. Retrieved April 15, 2016
Ganzini, L., et al. 2001. “Oregon Physicians’ Attitudes About and Experiences with End-of-life Care Since Passage of the Oregon Death with Dignity Act.” Journal of the American Medical Association. 285(18): 2363–9.
Gawande, A. 2014. Being Mortal: Medicine and What Matters in the End. New York: Metropolitan Books.
Oregon Legislature. 1997. Oregon Death With Dignity Act. Oregon Revised Statute. Chapter 127. (Salem, 1997). http://public.health. oregon.gov/ProviderPartnerRe sources/EvaluationResearch/ DeathwithDignityAct/Pages/ors. aspx. Retrieved September 1, 2016.
Oregon Public Health Division. 2016. Oregon’s Death with Dignity Act: 2015 Data Summary. https:// public.health.oregon.gov/Provider PartnerResources/EvaluationRe search/DeathwithDignityAct/ Documents/year18.pdf. Retrieved September 1, 2016.
Vermont Legislature. 2013. Vermont Patient Choice and Control at the End of Life Act. Act 039, Chapter 113. (Montpelier, 2013). www.leg.state.vt.us/docs/2014/ Acts/ACT039.pdf. Retrieved September 1, 2016.
Washington Legislature. 2008. Washington Death with Dignity Act. Complete Chapter 70.245 RCW. (Olympia, 2008) http:// apps.leg.wa.gov/RCW/default. aspx?cite=70.245. Retrieved September 1, 2016.